Tomorrow is a long time…

Tomorrow is a long time in the world of Motor neurone disease, what I mean by that is you can plan to do things for tomorrow but in reality a lot can happen before you get there. I suppose you could say the same about life in general, why worry about the future when we could get ran over by a bus tomorrow! I have my own little mantra when I’m having a bad day, “There’s always tomorrow.” I know that no matter how bad things get life goes on. I don’t want my house to be an MND patients house, I don’t want my mates coming here and feeling awkward, I don’t want my kids to be wary of having fun in the house because dads not well. My house is chaos and that’s the way I want it. I don’t want medical professionals coming here and being all serious. I can’t stand it so I usually make a joke about MND or when I go the hospital and the nurses ask “how I’m doing.” I’ll start performing forward lunges and try and do a bit of shadow boxing saying “I’m back in training next week.” It always gets a smile and sets my appointment up exactly the way I want it. Life’s too short to be serious.

It was around this time 5 years ago I was told to make the most of that years Christmas. The doctor couldn’t give me a time frame for my life expectancy, so he just said “Make the most of this Christmas Mark” my kids at the time were 10, 4 and 1. I appreciated his honesty but he cost me a right few quid that year!!

Christmas with a terminal illness is a very surreal feeling. The first year was the worst. Whilst everyone was opening their presents and smiling I couldn’t help thinking is this it? Is this the last Christmas I’ll spend with my family opening presents? Watching my kids faces light up? Tracking Santa on the laptop? Leaving carrots and mince pies out? Putting a bike together? I actually don’t miss that! Watching the wizard of oz ? It was also a bit of a turning point for me. Doing all that with my family on Christmas Day also made me think this can’t be it, I’m too young to die, my kids are to young to be without a dad. It wasn’t easy I never just decided I’m not going anywhere. MND doesn’t work like that. It took time to sort my shit out, A lot of soul searching went on in my head. I realised I’m extremely lucky. I also realised I’m a stubborn bastard but trust me that’s not a bad thing when MND is involved. I’m very lucky to be surrounded by people who love me.

As you can imagine people affected with MND tend to treat Christmas with joy and sadness. For me I’ll enjoy watching the kids open their presents, enjoy the chaos and smile, knowing I’ve survived 5 Christmas mornings since 2010 and that I’m enjoying life no matter what MND throws at me.

Thanks for everyone’s support this year. We’ve lost thousands of MND Warriors this year and we will lose thousands more next year. This illness is so much underfunded that it could be another 20-30 years before a breakthrough can be found. That’s not me being pessimistic its me being realistic. Please keep supporting the MND community and promoting MND awareness.

Mark, thank you so much for your honest raw and hopeful view on the world. This is my first time writing on your post. My name is Roz.

I am 52 years old, am married for five years to a wonderful man, Tommy, have an amazing 13 year old son Jesse and have a host of family and friends. I was diagnosed with Multifocal Neuropathy one year ago and am being treated at the Duke ALS Clinic in the US. The doctors are beginning to believe that I have both conditions.

I cannot tell you what a blessing you have been to me. When I found your post, I didn’t know anyone with ALS. But your words are mine, your feelings are mine and your outlook is mine. I too use a sense of humor to get through my days and live each day to the fullest as best I can. I even have a private FB page called the “Spiritual Warriors” which I started over a year ago to write about my journey through this unchartered territory.

I wanted to wish you and yours a glorious Xmas and let you know that I too will be experiencing joy as we open gifts and sadness wondering if this will be my last one. I have suffered two concussions in the past three weeks (falling backwards down the stairs). Never had issues with stairs but now I do. Feels like this is gaining momentum but as I lay here in bed with my neck brace, I couldn’t pass up the opportunity to thank you for being such a gift to me by breaking down my walls of isolation, for welcoming me a total stranger into your life by fearlessly sharing your life experiences and giving me hope along this journey.

You nailed it Mark! I’m pounding my fist on the table in agreement with all you described. I too, share the 2010 dx date for ALS, and share the “Who me? No way!” attitude. Thought I was the only one who saw the absurdity and humor in living with ALS/MND. Your blog is great!

I invite you to read mine for a return chuckle. Carry on – – and happy New Year (#6, that is!) to you, from Arizona, USA!